Traveling with Special Needs
We’ve all heard the stories of parents traveling with children on airplanes and the issues that can arise while doing so. The crying, the yelling, the bathroom breaks, the snacks, the kicking of chairs, you name it. I would take all of that any day over what we have had to deal with when flying…
One Year Ago
Thanks to Facebook, I was reminded that this was a snapshot of our “new normal” as a family of 5 exactly one year ago today. Three healthy girls, one of which may need some PT for walking. And no pandemic. Easy. Then life happened. 1 move to Italy. 5 surgeries. 4 days of chemotherapy. 1…
Worrying & What Ifs
When we left Italy I assumed I would no longer need to worry constantly about Keira because she will (hopefully) be “fixed”; that my focus would shift solely on Livvy and making her as comfortable as possible as this disease continues to take her life. That was wrong. I feel as if I am even…
Utah Bound
During the last part of our stay in Milan, we found out that the Utah site of Livvy’s clinical trial may be opening soon. Thankfully, it was in time for our return to the States and this week we made our first of many weekly trips to Salt Lake City, Utah for her infusion. The…
Home Sweet Home
On Friday, January 8th, we arrived home after 5 months in Italy. While we were essentially quarantining most of that time due to the pandemic in various stages and out of safety for the girls, each day was non-stop and it went by in a blur. As a client and friend of mine, Chris Rose,…
One Last Hospital Stay for 2020
Just so we could really round out 2020, Olivia and I are currently going on our 2nd night in the hospital at San Raffaele. The other day around 2am she started to get a fever and it kept coming back. The following morning (yesterday, the 29th) it was accompanied by some strange eye movements. So…
3 Months Post Gene Therapy
Today Keira began her 3-day 3-month post gene therapy check up. She had an EEG, bloodwork and saw the orthopedic surgeon. Tomorrow, December 29th, she gets an MRI, lumbar puncture and bone marrow aspirate. Then on December 31st, she has a neurological evaluation and physiotherapy evaluation. We get some results as they arrive this week…
What is Normal?
It is 2 a.m. on Monday, December 28, 2020 and I am currently watching the snow fall through the glass doors of our balcony here in Milan while Keira falls back asleep on top of me in our bed. Meanwhile, Livvy also just woke up and Dave just went to readjust her (because she can…
Heading Home Soon
It’s taken me a while to write this post – some VERY exciting news – not just because of lack of time while juggling the girls, work, the holidays, etc. But also because, for me, it’s bittersweet. On January 8th we are heading home to Arizona! It’s earlier than we expected based upon Keira’s rebirthday/gene…
Italian Cooking Lessons
With COVID-19 being an ongoing issue, we haven’t been able to get out and do much of anything during our time here in Italy. But we have been blessed to meet some truly wonderful people who have taught us a thing or two in the kitchen. Laura came over one day to teach us how…
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